Connect
Lymphedema - new support group: Let's connect
First off, thank you for these various support groups. They provide a helpful way for patients to connect and get help/support from other patients for their medical issues.
Not sure who decides or where to post a suggestion for a new support group - for "Lymphedema"?
If you do searches for lymphedema, you find posts in:
Cancer
Cancer: Managing Symptoms
Skin Health
Men's Health
Bones, Joints & Muscles
Neuropathy
with the majority of lymphedema posts within the Breast Cancer group.
I have been newly diagnosed with lymphedema, but not a result of breast cancer. When just searching the wider internet for lymphedema information, much of the information is related to breast cancer. When looking for help, they sometimes suggested elevating the limb. Or, they might suggest don't carry heavy items with the affected limb. My limb is my leg, hard to elevate, and need to carry my body weight daily with it :-/
I feel a separate support group would be beneficial since people that have had lymphedema would be able to offer suggestions on various treatments and suggestions to the newly diagnosed that we don't always get from our providers to deal with the swelling and/or pain. We have various treatments including manual lymphatic drainage and compression therapy. We also need to have specific exercises to treat the affected area. Then there is skin care and diet discussions. And we may need pneumatic compression pumps that may help with maintenance at home and/or dry brushing. Maybe discussions of surgical treatments.
Since lymphedema is a progressive chronic condition with no known cure that affects millions, it seems like it would be beneficial to have a dedicated support group. Women with lymphedema as a result of breast cancer may have many helpful tips or self-care suggestions, but since they primarily monitor the Breast Cancer group, they never see a lymphedema post under Men's Health or other groups that don't pertain to their existing conditions.
Any chance of getting a new group created specifically for Lymphedema patients?
Thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
Connect
I think this is a great idea. I had tongue cancer and surgery resulted in lymphedema in my face, neck, etc. I deal with it every day. I think we need a lymphedema group, too!
I also have non breast cancer related lymphedema in my left arm as a result of Metastatic Squamous Cell Cancer of the Axilla. I’ve been in therapy for over a year with the end game, hopefully, surgery. As I’m sure you know, it’s treatable not curable. For me, it’s been a long arduous process with no end in sight as of now. Not ready to give up. Keep me posted on the support group as there is a lot more I can share about this journey.
I think it is a wonderful idea. I have lymphedema of Mt face and neck from TO gue cancer. I am in therapy for it. It has also affected my tongue resulting on slurred speech. It has had a big affect on my day to day life. I have difficulty communicating so going out even to shop is rare.
I am swollen in the mornings that it takes 4 hours to get going.
So I am up very early each day.
I would love to be a part if a non breast cancer Lymphedema group.
-
Like -
Helpful -
Hug
2 Reactions@kit75, this is a great idea and thanks for kick-starting this support group in the Cancer: Managing Symptoms group and Just Want To Talk group, which welcomes everyone experiencing lymphedema related to cancer and other conditions.
Let's start with introductions. Pull up a chair and share your experience with lymphedema.
@kit75 @lilypilly @janiebill @sandy8043, how about getting the ball rolling. What caused your lymphedema? What part of the body is affected? What tips would you share with others?
-
Like -
Helpful -
Hug
1 ReactionHave you tried a lymphedema pump? I use one made by Tactile Medical. My surgeon prescribed it and insurance paid for it. I also do massage. But the,pump really helps. I will try and find a link and post it.
-
Like -
Helpful -
Hug
2 Reactionshttps://tactilemedical.com/our-lymphedema-solutions/for-head-and-neck/
-
Like -
Helpful -
Hug
1 ReactionYes, @kit75. Thank you for kick starting a Lymphedema Support group for non breast cancer. So needed! I will say to those ladies and gentleman that have had cancer in an area similar to mine, (axcilla AKA arm pit) breast cancer ‘helpful hints’ can be good.
10 years ago I had breast cancer on the right side and now have left swollen leg that is not lymphedema but Venous Insufficiency… similar symptoms but needed Lymphocentigraphy (sp) testing to determine.
-
Like -
Helpful -
Hug
1 ReactionMy Lymphedema Surgeon has told me to not use the pump at this time. It could be because I’m in such an advanced stage. They told me why but darned if I can remember! I’ll ask when I go Wed.
-
Like -
Helpful -
Hug
3 ReactionsI do have a very nice new pump from Lymphapress ordered by my therapist. Medicare covered so that’s a plus!
-
Like -
Helpful -
Hug
1 ReactionLike others here, I deal with lymphedema; for me, it's in my legs mostly. My situation may be caused by kidney disease, or my cancer. Compression socks work well sometimes. Lymphatic massage by my local gal works great [she comes to our house!], and she taught me how to do some of that on my own. Also, we have tweaked my medications to help "flush" my system of extra fluids. Simple walking when I am able to is also a good thing to do.
Ginger
-
Like -
Helpful -
Hug
4 Reactions